HIV and sexuality: why are people with disabilities left behind?
HIV and sexuality: why are people with disabilities left behind?
HIV Australia | Vol. 12 No. 2 | July 2014
By Suzanne Lau Gooey and Dr Paul Chappell
The prognosis and progress for people living with HIV (PLHIV) have been extraordinary over the last two decades.
Most HIV-positive people who access antiretroviral therapy (ART) now live with a manageable chronic illness, instead of facing an ugly, premature death.
The catastrophic scale of the AIDS pandemic drove enormous changes in health services, education, sociocultural and economic development. HIV and AIDS was not only a medical crisis, but also a product of poverty, power, gender and marginalisation.
HIV required new paradigms of infectious disease control – prevention through caring for HIV-positive people and those most at risk, rather than punishment through quarantine and fear-based awareness campaigns.
Effective responses to HIV have also been based on protecting the human rights of the most vulnerable and marginalised groups – gay, lesbian, bisexual, transgender, queer (GLBTQ) communities, women, young people, sex workers, people who inject drugs, migrants, and people from culturally and linguistically diverse (CALD) backgrounds; however, one group has been left behind. Why aren’t people with disabilities included?
HIV and AIDS has forced us to speak openly about what used to be hidden and taboo subjects, such as sexuality, sexual health and sexual practice, and to provide HIV information and sexuality education for many target groups – what about the needs of people with disabilities?
According to the first ever World Report on Disability, published by the World Health Organization in 2011, nearly one billion people, or 15% of the world’s population, are living with a disability.1
The prevalence of disability is also growing due to population ageing and the global increase in chronic health conditions, including HIV and AIDS.
In addition to these high prevalence rates, increasing evidence also suggests that people with physical, intellectual,2 cognitive, sensory or mental health disabilities are at equal, if not increased risk to all known HIV risk factors.
For example, poor access to information on sexual and reproductive health on HIV/AIDS; poor access to health care, including HIV/AIDS services; poverty and marginalisation; and higher rates of sexual abuse and exploitation than their non-disabled peers.
Despite these increased risk factors, people with disabilities are rarely included in HIV and AIDS policies and programs because they are often not perceived as being at-risk of acquiring HIV.
One of the underlying reasons for this is due to some widely held misconceptions about the sexualities of people with disabilities. Prominent socio-medical discourses in most societies construct people with physical or sensory impairments as incapable of experiencing sex, romantic love, or relationships.
In addition to being described as asexual, common public perceptions view those with intellectual impairments or mental illness as indistinct, over-sexed and unable to control their sexual desires.
These misconceptions surrounding sexuality and disability have not only drawn attention away from the sexual agency of disabled people, but also from the socio-cultural meanings of disability and desirability.
In addition, these misconceptions portray people with disabilities as one homogenous group, failing to recognise that they also form part of other key populations at risk of HIV exposure, such as men who have sex with men, sex workers and people who inject drugs.
As a result, very few countries around the globe consider disability when collecting HIV prevalence data.3
Unfortunately, although the global disability movement has made great strides in promoting disability rights, they have been slow to recognise sexuality as a matter of human rights.
As summed up by Ann Finger, a prominent disability activist: ‘Sexuality is often the source of our deepest oppression; it is also often the source of our deepest pain. It’s easier for us to talk about – and formulate strategies for changing – discrimination in employment, education, and housing than to talk about our exclusion from sexuality and reproduction’.4
The perception of people with disabilities as non-sexual routinely results in the suppression of sexuality, notably affecting young people. Young people with disabilities are generally discouraged from engaging in discussions around sexuality.
Furthermore, combined with poor access to education due to physical and attitudinal barriers, young people who have a disability often receive little formal sexuality education, since it is believed that they do not need such knowledge or will become promiscuous if it is provided.
Outside of school, parents of children with disabilities are also often reluctant to discuss sexuality and HIV with their children, perhaps in the belief that by not talking about sex they are protecting their children from future rejection and vulnerability to sexual abuse.
Although similar behaviours occur among parents of children without disabilities, this silence surrounding sex and sexuality is felt more acutely among young people growing up with a disability, because it is commonly believed that sex will never be part of their lives.
Despite these misconceptions, there is a growing awareness of the need to include children and adults with disabilities in sexuality and HIV services. For example, in South Africa, the Health Economics and HIV and AIDS Research Division (HEARD), has developed an intervention toolkit for educators who teach sexuality education to learners with disabilities in South Africa’s Life Orientation lessons.
Likewise, Disability, HIV and AIDS Trust (DHAT),5 a regional disabled people’s organisation (DPO) has been established in Zimbabwe to promote the rights of people with disabilities living with or affected by HIV, AIDS, tuberculosis, cervical cancer, and including sexual and reproductive health rights.
The United Nations Convention on the Rights of Persons with Disabilities (UNCRPD)6 was conceived because all existing UN conventions had failed to protect persons with disabilities (PWDs).
The UNCRPD came into force in 2008, and so far, has been ratified by 147 countries.7 But how far have people with disabilities come as a result?
Article 25 (a) of the UNCRPD states that governments: ‘shall provide persons with disabilities with the same range, quality and standard of free or affordable health care and programmes as provided to other persons, including in the area of sexual and reproductive health and population-based public health programmes.’8
Article 23 states that governments: ‘shall ensure that :a) The right of all persons with disabilities who are of marriageable age to marry and to found a family on the basis of free and full consent of the intending spouses is recognized; b) The rights of persons with disabilities to decide freely and responsibly on the number and spacing of their children and to have access to age-appropriate information, reproductive and family planning education are recognized, and the means necessary to enable them to exercise these rights are provided.’9
People living with HIV have demanded their human rights and those of other vulnerable groups be protected and upheld, as the foundation of effective responses to the HIV pandemic.
HIV is recognised as a disability under anti-discrimination law and the UNCRPD. But where is the HIV community’s advocacy, support and solidarity with the disability community?
People living with HIV (PLHIV) and people with disabilities (PWD) share similar experiences of stigma, discrimination, devaluation and exclusion. Neither people living with HIV nor people living with disabilities are regarded as ‘normal’ sexual beings.
Considered unworthy of motherhood, women with disabilities and HIV-positive women still routinely undergo forced sterilisations and abortions in many parts of the world.
However, neither the PWD nor the PLHIV movement regard people living with HIV as having a disability, despite the fact that both groups experience the debilitating effects of stigma, and have increased care and support needs.
Both the HIV and disability communities demand meaningful involvement and equal partnerships, and reject charity or medical models, that devalue or disempower them as patients or weak, dependent welfare recipients.
People with disabilities have called for ‘Nothing about us without us’ since the 1980s, and the early AIDS activists also supported the Americans with Disabilities Act.10
The GIPA principle of meaningful involvement of people living with or affected by HIV was formalised by 42 countries at the Paris AIDS Summit in 1994.11 Both movements desire genuine social inclusion, where they live with dignity and are valued participants and contributors in society.
Individual disability activists and people living with HIV have called unsuccessfully for coalitions between PLHIV and PWD since the mid-2000s.12 Both movements have different strengths and can complement and learn from each other.
People with disabilities and people with HIV both need to break down their beliefs based on stigmatising stereotypes about each other and focus together on their common goals of access, equity and genuine social inclusion.
Australia’s successful HIV strategies have incorporated partnerships with key communities, but its domestic and international HIV programs in treatment services and capacity building of PLHIV organisations have not linked with people with disabilities and DPOs.
The National Association of People with HIV Australia (NAPWHA) was a member of the peak Australian Federation of Disability Organisations in 2004–2013, but withdrew to focus on wellbeing instead of disability.
An urgent alliance is needed between people living with HIV, HIV and development practitioners and people with disabilities, DPOs, disability practitioners and donors.
HIV is not only a risk to people with disabilities in Africa, but also to other regions, especially in Asia which is home to two-thirds of the world’s population. HIV, development and gender violence programs must also encompass disabled people.
The 20th International AIDS Conference (IAC) being held in Melbourne is themed ‘Stepping up the Pace’, to reflect the urgent need to reverse the trajectory of the HIV epidemic. However, no IAC plenary session has ever included a person with a disability, not even the 2014 plenary titled ‘No one left behind’.13
Similarly, the AIDS 2014 Melbourne Declaration: Nobody Left Behind14 fails to name people with disabilities as a key affected population.
Urgent action is needed now, as HIV responses are scaled-up, to ensure that people with disabilities are included, not only as service users, but also as leaders and partners in better HIV programs.
There can never be an AIDS-free generation if we continue to leave behind 15% of the world’s population – people with disabilities.
Suzanne Lau Gooey is a former chair of Positive Women Victoria, and a member of the Disability Reference group at the Victorian Equal Opportunity and Human Rights Commission since 2010.Dr Paul Chappell is a Postdoctoral Research Fellow at the University of Johannesburg, South Africa, and also a Co-chair of the International Disability and Development Consortium (IDDC) HIV and Disability Task Group.
References
1 World Health Organization (WHO), The World Bank. (2011). World report on Disability. WHO, Geneva. Retrieved from: www.who.int
2 Intellectual disability originates before adulthood. Some countries use the term ‘learning disability’ or ‘developmental delay’.
3 Groce, N., Rohleder, P., Eide, A., MacLachlan, M., Mall. S., Swartz, L. (2013). HIV Issues and people with disabilities: a review and agenda for research. Social Science and Medicine, 77, 31–40.
4 Finger, A. (1992). Forbidden fruit: why shouldn’t disabled people have sex or become parents? New Internationalist, 233, 8. Retrieved from: http://newint.org
5 The Disability, HIV and AIDS Trust website is available at: www.dhatregional.org
6 United Nations (UN).(2008). Convention on the Rights of Persons with Disabilities and Optional Protocol (GA resolution A/ RES/61/106). UN, Geneva.
7 For information about ratifications and signatories of the Convention and its Optional Protocol See: United Nations Enable website. Latest Developments. Retrieved from: www.un.org
8 ibid. Article 25 – Health. Retrieved from: www.un.org
9 ibid. Article 23 – Respect for home and the family. Retrieved from: www.un.org
10 Shapiro, J. (1993). No Pity: People with Disabilities Forging a New Civil Rights Movement. Times Books/Random House, New York, 127.
11 UNAIDS. (1999). From Principle to Practice: Greater Involvement of People Living with or Affected by HIV/AIDS.Retrieved from: http://data.unaids.org
12 Tataryn, M. (2004, May). Bridging the gap: a call for cooperation between HIV/ AIDS activists and the global disability movement. Presentation delivered at the Canadian Disability Studies Association, Winnipeg, Manitoba, Canada. Retrieved from: www.aidsfreeworld.org
13 Conference Coordinating Committee. (2014). AIDS 2014 list of sessions. Wednesday 23 July: No one left behind. Retrieved from: www.aids2014.org
14 International AIDS Society (IAS). (2014). AIDS 2014 Melbourne Declaration: Nobody Left Behind. IAS, Geneva. Retrieved from: www.aids2014.org/declaration.aspx